pre mature




Lots of stuff

Since my last post lots of things have been going on.  Amanda has had some good days, and some bad days…this is SMA, I guess I have to get used to the bad times, learn to put them behind, and keep going.

We finally moved! We are now in a bigger, handicap friendly apartment in a neighborhood where Amanda can go out for walks– our previous apartment had one step in the lobby that was just unavoidable and that little step was such an obstacle, I had to literally lift Amanda’s stroller with all her equipment and herself to be able to go anywhere.  I am so happy that there are ZERO steps at Murano! Plus, we have tons of neighbors that we know, especially my first cousin, Juandi’s first cousin, and my brother and sister in law :) .  Moving was tough, I thought I had everything under control, but there is a time when that is just impossible.  The procedure was the following: on moving day I took Amanda with all her equipment to Murano, settled her in my cousin’s apartment and then I went to our apartment to try to get things settled.  Meanwhile, Juandi stayed in  our old apartment and coordinated things from there.  It was convenient to leave Amanda a few floors down…I would periodically go check on her, and thankfully those hectic moving days were good for her–she would nap in the balcony with the sea breeze blowing onto her face and she just loved it!  She spent two nights at aunt Mary’s and finally on Saturday she slept in her new home.

On Sunday, we celebrated Father’s Day at my brother’s apartment a few floors up, so we were able to easily take Amanda.  She napped in Valentina’s room and when she woke up she was the center of attention, everyone wanted to make her smile and play with her! The pictures talk for themselves.

Yesterday, Amanda had a bad choking episode, and since she had been complaining and seemed to have more secretions we took her again to her pulmonologist.  She prescribed antibiotics for her ear infection which has not completely healed.  This morning she had some fever but it is already gone.  Hope she gets better soon so she can go out on walks and play.


Last days at old apartment



With Grandpa celebrating Father's Day




Center of attention




With my daddy celebrating Father's Day








Mommy, daddy and Mandy




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  1. Tanya de Heilbron says:

    Siempre pensando y rezando por Amanda y su familia, son un ejemplo de fuerza y union que le estan pasando a su hermosa niña. Los admiro muchisimo y que Dios le continue dando dias BUENOS a Amanda. bendiciones y un GRAN abrazo, Tanya

  2. Pedro C says:

    Muchas gracias por compartir. Primera vez que leo su pagina y estoy agradecido con ustedes por compartir sus experiencias. He tenido y tendré a Amanda y a ustedes en mis pensamientos y les deseo lo mejor siempre. Me sumo de corazón a la causa y que Dios los bendiga.


  3. OW says:

    Marcela y Juandi: un gran abrazo a ustedes y un beso a nuestra sobrina Amanda. Y que Dios les bendiga siempre.

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